Aiden, our first born, was four and half months old when my husband and I noticed rust colored urine in his diaper.  We took him to his local pediatrician immediately and asked that a urinalysis be performed.  It was at that time that blood and protein were discovered in his urine, as well as a positive culture a few days later.  My husband and I were informed that urinary tract infections are uncommon in boys and that it would be best to see a specialist to make sure there was no deformity of any kind.  Aiden’s pediatrician referred us to Children’s Hospital in Milwaukee because they could see us the soonest.  It was at that point our entire lives changed forever……... 

We went to Milwaukee to see a renal specialist.  Prior to seeing her, she requested an ultrasound be performed.  The ultrasound revealed a large tumor/mass on Aiden’s right kidney.  Needless to say, we were scared, devastated and all of the emotions that could possibly go along with finding out your child has a tumor.  The renal specialist had two oncologists speak with us and examine Aiden.  It was then that we met the WONDERFUL Dr. Browning and Dr. Cameron.  At the time, it was thought possible that the tumor could be benign. Regardless of its pathology, it had to come out as soon as possible, so they began to assemble a surgical team.  Aiden had a chest CT scan before we left the hospital and we were scheduled to return for the tumor removal the following week. 

The night before the surgery consult, we received a call from Dr. Browning (Aiden’s oncologist) and she informed me that they were over 90% certain Aiden was going to need chemotherapy.  With all of that said, it was decided the best plan of action was to meet with Dr. Oldham about the surgery and plan to have a central line put in.  We arrived at Dr. Oldham’s office and were informed that the chest CT scan revealed metastases on both of Aiden’s lungs.  Dr. Oldham also explained that the tumor was in a crucial spot and that removing the tumor at that time posed a risk of hitting the large artery called the vena cava.  The plan of action was to biopsy the tumor so we knew what type of cancer we were dealing with, and to also place a central line in Aiden. 

The procedure was performed the following day.  It was a few days after the surgery that Aiden was diagnosed with a very rare form of cancer known as a Rhabdoid.  The Rhabdoid is a very lethal and aggressive form of cancer that typically does not respond to chemotherapy…things were looking very grim.  We suddenly felt all alone, like our whole world was being blown apart; we were completely numb from the inside out.  Aiden was put on the HOT Unit and things began to move very quickly, with bone aspirates to check his bone marrow and an MRI to look at his brain…all of which came back great.  It felt good to get some positive news, because for a while there was no such luck as far as our situation was concerned.  My husband and I sat down with Dr. Browning and discussed Aiden’s situation.  It was a mutual decision to start chemotherapy immediately because without it, Aiden wouldn’t have a chance.

With chemotherapy underway, Aiden began to have some bladder issues and once again things were about to take a turn.  On June 20^th, Aiden became very lethargic.  Labs were taken quickly to confirm that his hemoglobin was at 3.5…we were now facing a serious emergency situation.  Aiden was bleeding out through his bladder, basically bleeding to death internally, and decisions needed to be made quickly.  (Later, the general consensus for the cause of his hemorrhaging was that the tumor was beginning to die very rapidly…an uplifting sign that the cancer was responding to treatment).  Soon our room was full of doctors.  It was decided that Aiden would undergo an emergency embolism performed by Dr. Kay (a tremendously gifted woman with an amazing team that saved our son’s life…we cannot thank her enough) to try and stop the bleeding.  If Aiden made it through the embolism, he would face an additional surgery the very next day.  We were rushed to PICU and things once again happened very quickly.  We were given time alone with Aiden because there was a very good chance that he would not make it through the procedure.  Aiden was rushed off and we waited.  Every door that we heard open made our hearts stop beating; it was very scary.  The surgery was performed after-hours, so the area was very quiet…you could hear every noise.  A few hours later we received the WONDERFUL news that Aiden remained stable during the procedure and that he did in fact make it through.  The team performing the procedure was amazing and we couldn’t have asked for a better outcome.  We did however understand that the days ahead were also going to be very critical because Aiden now had to undergo a surgery that was going to be very risky.  The fact that his counts would be dropping from the chemotherapy would in turn slow his healing creating an even more difficult surgical/recovery situation.  We went back to PICU to be with Aiden and it appeared as though every tube imaginable was coming from my little boy.  It was so difficult because I couldn’t hold him or comfort him in the way a normal four month old needs to be comforted by his mom.  We had the best nurse in PICU named Tonya and she took very good care of Aiden and my husband and I.  The entire staff in the PICU was phenomenal, the doctors and the nurses were great. 

On June 21^st, our four-year wedding anniversary, Aiden had surgery to resect his right kidney along with the tumor.  The procedure was estimated to last three plus hours with Dr. Oldham, whom we cannot say enough about, performing the surgery.  There are no words to thank this wonderful man the way he should be thanked.  He saved our little boy and did an amazing job with his surgery.  The surgery took less time than expected and it was a success.  The tumor was removed as well as some of the surrounding lymph nodes.  Dr. Oldham said the procedure went much easier than he anticipated.  Dr. Oldham is truly a brilliant man; we could not have asked for a better doctor to operate on our son.  We also couldn’t have asked for a more wonderful anniversary gift.  We went back to PICU where we spent close to a week with Aiden; he was progressing very well.  It wouldn’t be long and we would be back up on the HOT Unit. 

We were officially on the HOT Unit once again and spent the next couple of weeks there before we were able to finally go home with our son for a short while.  The next several weeks were followed by weekly chemotherapy and doctor visits, as our hope was to clear the metastases from the lungs.  We received good news after the first scan that the metastases were in fact shrinking.  We were then presented with a new treatment plan that could be implemented if the metastases cleared entirely.  Dr. Browning talked to us about Aiden harvesting his own bone marrow to use after three high dose chemotherapy treatments.  We were all in agreement on pursuing this treatment plan when and if possible.  The second CT scan showed a normal report, which meant the metastases were gone…WONDERFUL news once again.  We were now about to enter a whole new realm. 

Aiden harvested more than enough bone marrow for three rescues following the three high-dose chemotherapy treatments.  They needed a minimum of six million cells, and Aiden gave them 21 million cells.  After Aiden’s first high dose treatment, he became very ill and had to be transported from our local hospital up to Children’s.  I cannot say enough about the transport team from Children’s either….they too were amazing.  We received a visit from them a few days later just to check on Aiden and see how things were going, they even brought him gifts.  Things were touch and go for a while after Aiden’s first treatment; we were not sure if we were going to be facing another emergency surgery or if things would gradually get better on their own.  Thankfully, there was no emergency procedure and with time Aiden got better.  We now had the data from Aiden’s first treatment to help with the subsequent rounds.  This information helped the staff know how to treat him and what to look for if he in fact got sick again. 

Aiden sailed through the next two treatments, recovering well and only hitting a few minor bumps.  He did have to be treated for the same complication all three times.  However, after each of his last two treatments, the symptoms were caught so quickly (thanks to the wonderful doctors and nurses on the HOT Unit) that he didn’t get nearly as sick.  After his second high-dose treatment, Aiden came home on antibiotics and fluids.  This proved to be a bit interesting because I was running them around the clock alternating between his two lines.  I was willing to do anything though, to allow Aiden the opportunity to be at home before his next and final treatment.

With treatments completed, Aiden had his PICC line removed.  He had an MRI of his brain followed by chest, abdomen, and pelvis CT scans, all of which looked great.  His port was removed and we had the best Christmas gift of all.  Aiden was able to be with the entire family…it was fantastic.  Then on January 18^th, we celebrated Aiden’s first birthday; it was wonderful.  He destroyed a cupcake and his cake with our entire fabulously-supportive family cheering him on.

Today Aiden continues to be well and is still cancer free.          

This is the story of Aiden’s Fight for Life……Whatever it Takes!!